Hi Everyone. Hope all had a nice holiday. Sean, our peanut/egg allergic 16 month old, spent Easter in the ER and then was admitted for pneumonia and severe asthma. They tell me asthma is common with children who have allergy. Anyway, when he was sent up to Pediatrics, I kept stressing the fact the he was peanut/egg anaphylaxis. I told my husband to keep the EpiPen next to his bed in case of reaction. The nurse informed us that we could not use it, they would have to order one and they would use theirs. She asked to see his to get the info off the script. While looking at it she explained that her husband had one. I showed her the EpiPen trainer that I got from FAN. She was so excited to see this because, and I quote, "Wow, can I try that. My husband has one but I don't even know how to use it" "What do you do, pull this black end off?" My husband and I were in shock. This is a high risk childrens hospital. I told my husband that I don't care what they said, he is to administer Sean his EpiPen if it is necessary. The whole key to success is in your quick response to administer the EpiPen. I don't think we should risk taking the chance that they have to read directions. They also gave me the menu to fill out. It had pb&j sandwiches on it and many other contaminated food. No I am scared whether or not the child next to him is going to order pb&j. I would like some opinions whether or not, and how, I should contact the patient advocate and discuss the severity of peanut allergy, staff training, and the possibility of special menu. Also, is it a good idea if peanut allergic children are in a room where the possibility of the person rooming with them ordering pb&j or any other peanut contaminated food can not happen? Right now I feel so uneasy because I know that Sean is at their mercy. Thanks Lynda

On Apr 5, 1999

Boy Lynda, that really is scary that a pediatric nurse does not know how to administer the epi. Equally as scary is the fact that they evidently have pnt all over the menu. Where can our children be safe if not in a childrens hospital?

On Apr 5, 1999

DH...Hi thanks for the reply. We just came home from the hospital. On an even scarier note...while being discharged, I asked the nurse for the epipen that was ordered for my son for standby in case of anaphylaxis. She searched the medicine bins and nurses station....and lo and behold....there was none. There was an order for one to be put bedside, but no one bothered filling it. I can not tell you how horrified I am. No matter what, my husband and I had ours but when he was admitted, they said we could not use ours. They would have one for him. I think the only place our children are safe is with us.

On Apr 5, 1999

Hi I took my daughter for her check up last week and her pediatrician commented that she considers the hospital to be much worse of a risk for accidental contamination than the schools. She commented that they pick up the trays and leave them sitting around until the next meal before being collected so any food is lying around. My son (not the peanut allergic child) was in hospital the week before Easter with severe asthma too, and I noticed all kinds of risky areas, including all of the snacks on the coffee cart that comes around and the area they have for parents to make snacks for their kids (which includes peanut butter tost).

I don't know the policy at your children's hospital, but here you can request certain special foods 24 hours a day and a special menu. The thing is they don't inform you of that - I only found out because we saw the dietician last year when my son was anaemic! You should ask to talk to the hospital dietician to have your meals specially ordered. You should also ask your doctor about getting a private room - my doctor always gives us one. With asthma and pneumonia it can probably be justified for respiratory isolation (as if the doctor is worried that your son may get all the other kids sick with the virus that has set off his asthma) if your doctor does not feel that his allergy is sufficient justification. Here, anyway, if the doctor orders isolation (and so a private room) it is not charged to the patient or your insurance because it is a medical concern. At least at the hospitals these days they let you stay with him 24 hrs a day so you can "protect" him from the risk of exposure!

Good Luck.

Deb

On Apr 6, 1999

Hi Lynda, How scary!!!You don't know who to trust with this allergy. Here you think your son is safe in the hospital. I would write a letter regaurding this. Anyways, I hope Sean is feeling better. What an awful way to spend Easter. Good luck.

On Apr 6, 1999

Lynda - Please learn from my husband and my mistake when it comes to the hospital...We were the typical parents who listen to what the doctors told us concerning our daughter who has severe kidney problems. One night when we went to the ER with a fever of 105 and they sent us home with the song and dance that it was a cold (dispite our quiet protests that we thought it was kidneys). Within two hours our daughter went limp, stopped talking or moving and we had to rush her back to the hospital where they immediately admitted her to the ped. intensive care unit with an antibotic resistant infection. Our daughters kidney has been so badly damaged that it has not grown since that infection and we are now faced with high blood pressure and renal failure in our 2 year old child! Potenially she may need a tranplant. She also may stop growning at any point.

There is not a day that doesn't go by that I don't think "What if they had started the I-V antibotics immediately???" If we would have waited to take her back to the ER (which we considered because we were worried we would "upset" the doctors by returning) we would have lost our beloved Madison.

Please learn from our mistake and be a VERY LOUD advocate for your child. You know your child best and don't be afraid to ask for a second and third opinion at the hospital.

Good Luck and Take Care

--Kelly--

On Apr 7, 1999

Lynda -- I am so sorry for you and your child. I'm glad you are all back home. I spent many holidays (Easter, Christmas, and Halloween) in the ER/hospital as a child, usually because of eating candy or contaminated candy. I hope you have recovered emotionally! As for hospitals and their staff, they need to be educated. When I had my last serious reaction and went into shock a couple of years ago, my allergist had to convince the staff at Georgetown Univeristy Hospital in Wash. DC to keep me overnight. Thank God, since I had a 2nd reaction later on. Granted, Georgetown is a teaching hospital, but I was inspected, prodded, poked, and examined by over 20 doctors a day who had "never seen anything like this." They couldn't understand why I was so swollen and covered with hives, and kept asking me if I could be allergic to any type of detergent, perfume, or lotion. They kept asking my parents if it might be food poisoning!!! Some had never even heard that a peanut allergy could be so severe (and these weren't all student doctors). Bottom line is to be your child's protector and like stated above -- DEMAND the epipen even in a medical environment. Take care.

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On Apr 7, 1999

Thanks for all the support! Kelly...I am very sorry for what has happened to Madison. I now know not to trust in the word of anyone and to follow-up. But, most of all, I now know to trust in my gut feeling when I think something is wrong with my child and to be persistent. I followed-up with the hospital and suggested that they contact FAN for educational purposes. They gladly took all the information....Let's hope they use it! Lynda